What I wish my parents knew about endometriosis

In the following blog, a young woman shares what it’s like to live with endometriosis, a painful condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location.

I remember when I first started having pain. I was 14 years old and told my mom about a constant pain in my side. She brushed off my comment and gave me some Advil thinking it would help. After a while the pain just never subsided so I told her I needed to see the doctor. After a number of tests, hospitalizations, surgery, and a year of searching for “what was wrong”, it was confirmed that I had endometriosis.

Even though the process of figuring out “what was wrong” had concluded, my pain was still present. It did subside a bit after going on birth control pills and other pain alleviating remedies, but every now and then there would be moments of unbearable pain. My parents and friends would comment and say things to me like “You must be feeling so much better, or “I’m so glad you’re in less pain, the surgery and medicine really must have been what you needed”. Little did they know that endo is not like a cold that goes away after a few days.

What I really wish my parents knew is that the pain is always there and taking hormone medicine doesn’t mean that I’m cured. I know when I’m stressed out or under a lot of pressure my pain is worse than normal, and although I’m able to manage it, I don’t always get the support that I need. I wish my parents asked me how my pain is more often. As soon as I was diagnosed it seemed like there was a solution to the problem, and no one had to think about it anymore because the problem was “fixed”. My parents stopped asking me about my pain, how I was feeling and what they could do to help.

I think the biggest thing that parents and friends don’t realize it how much endometriosis changes the way you feel about your body. At first, I felt a little strange not to experience a menstrual cycle like the rest of my friends each month, and it was weird not to have to carry tampons in my purse anymore. However, I’ve embraced the changes that have occurred in my life and sometimes I’m happy that I don’t have the burden of getting my period every month.

I wish my parents still talked to me about having endometriosis, and how it makes me feel to be a young woman with this disease. My suggestion to you is the same advice I give myself, which is to talk about your pain and tell the people who care about you what’s bothering you. Don’t assume that others know how you’re feeling. The only way to let someone know that something is wrong is to tell them. Have a conversation with those that love you and give them a chance to be helpful and supportive.

Children’s Hospital Boston will be hosting an annual conference on living with endometriosis on Saturday, March 24, from 8 am-1:30 pm. For more information, visit the website of Children’s Center for Young Women’s Heath.

 The conference’s keynote speaker will be Marc Laufer, MD, chief of Children’s Division of Gynecology and co-director of the Center for Young Women’s Health. Laufer has done extensive research on endometriosis and is devoted not only to caring for young women with condition, but is determined to help find a cure.

Learn about Laufer’s research, contact the doctor or a member of his team or read more about living with endometriosis.


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